Listening Therapy Tune up Time

Mushroom
Beauty from decay

Recently my listening therapist suggested it was time to do redo part of the Listening Therapy I undertook in April of 2019. Despite the dramatic improvements the Listening Therapy brought me, I need to remember there is still an injury that I need to monitor and deal with. There is a need for a periodic Listening Therapy tuneup.

Over the past several months, basically the better part of the summer I have found myself close to sensory overload. Too often I have had to give myself recovery time. Despite that my sensory loading is not getting cleared enough to give me the needed resilience to deal with my environment.

For me sensory loading comes mostly in the form of emotional experience of seeing hurt, loud or persistent noises, and cognitive demands that don’t give me enough time to reflect, process the information and make decisions for find resolutions.

Not all sensory loading is a result of negative experiences. When I see acts of kindness or when someone shares a celebrated emotional event I find I need recovery time.

Challenging experiences

Early this summer as I made my way into the city I came across a roadside scene of dozens of children’s shoes. The was shortly after the discovery of unmarked graves at the Kamloops, BC residential school site. The scene of shoes would not leave me. As I thought about my four year old granddaughter the scene put me into sensory overload. Imagining someone at such a tender age being torn away from her family. Unimaginable fear, sorrow, heart ache and sense of abandonment. Reminders of that scene often brought tears to my eyes. This experience prompted my poem: I Weep.

Kingston Rd

In a gathering a few weeks ago someone shared their personal struggles. As part of the sharing she acknowledged a half dozen people who had reached out to her over the past number of years. She followed up with handing a personal note of thanks to each of her support people. The pain and care that was shared put me into sensory overload.

Most recently I hit a double setback within two hours. I was biking to an Indigenous Reconciliation event. Knowing that it would be emotionally taxing. I decided to bike to the event, partly out of convenience. The strenuous, rhythmic physical workout is a helpful sensory recovery method. Shortly before arriving at the event a truck approached me from behind. I was well aware of it’s presence. Then for some reason the driver blew the air horn when he was right beside me. This put me into a rather fragile sensory state. An hour later I attended the Indigenous Reconciliation event.

On the one hand, given my sensory state I should have foregone the event. But I couldn’t for two reasons. First of all I would have to deal with the emotional loading of walking away from an event that three generations of my family was attending. Secondly I would have to deal with the emotional loading of not supporting people who have suffered immensely. And so I joined in for most of the event. Near the end I had to pull myself away.

Symptoms

Going into sensory overload has effected much of my activities over the past few months. I have two favourite activities that helps me with recovery. I have a one acre garden, a place that is peaceful, a space that moves with the rhythm of nature and that gives me a good physical workout. Low on emotional loading. Low on cognitive loading. It’s a rhythmic routine of either hoeing, weed pulling or harvesting some vegetables.

My other recovery activity is cycling. An activity that has a narrow cognitive focus. A physical activity I find energizing and which counters the mental fatigue that is part of dealing with sensory overload. It puts me into an environment in which I get quality eye training. I move from looking what’s coming up in front of me to scanning my surroundings taking and cherishing the views.

Recently I was away from home for four days. In that time I biked over 200 km. With four days of not being on a schedule, taking on zero responsibilities and enjoying great weather while cruising down relatively quiet roads I felt better than I had for the past several months.

Self Care

I need to figure out what my limits are for proper self-care. Following my Listening Therapy treatment which started in April of 2019 I was suddenly capable of taking on many more activities and having greater endurance for the activities I had been doing.

My increased activity level has also increased my potential exposure to environments that puts me at risk of sensory overload. As I look back over the past year I recall situations in which I did not have the energy to properly navigate some of the situations I found myself in.

The Challenge

In the natural world there a number of ways in which wildlife deal with danger. The two that tend to come to mind are fight or flight. What is often overlooked is a third choice, namely playing dead. We’ve all heard the term ‘playing possum’. There are a number of animals, because they lack speed and lack strength will ‘play possum’.

When a person encounters danger and are not able to simply walk away from it generally have a choice of Flight or Fight. They can either stand their ground or make a hasty retreat.

What we don’t often consider is how people choose the third option. The one example that comes to mind is a woman being assaulted. When a woman doesn’t have the option of fight or flight, her best option to minimize injury is to cooperate. Sadly, that creates the impression that is wasn’t an assault because it has the appearance of being a consensual encounter.

I have found myself in situations in which I was not treated with respect or that my request for accommodations related to my TBI and struggling with sensory overload, a recognized disability, was not granted. When I was given a clear signal that my request was unreasonable and that it impinged unfairly on others, I did not have the cognitive or emotional energy to mount a counter argument. I did not feel I was in a safe place where I would be heard. In the end it looked like I was in agreement with my request being denied.

For myself I would find a way to rationalize that I had not betrayed myself. I convinced myself that I would find a way to manage my sensory loading. From a self-care point of view that is counter productive. By continuing to allow this type of rationalization to continue I would gradually make my participation in my community unbearable.

Finding Resolution

I know I can not continue in this manner. I need to address the growing number of situations in which I have ‘played possum’ and overlooked the importance and need for greater self-care.

My first step is to redo the SS&P (Safe and Sound Protocol) part of the Listening Therapy. This is intended to help calm the vagal nerve. I need to bring my autonomic system into a social mode and away from ‘fight or flight’ or dorsal.

Dr. Stephen Porges has posited a Poly Vagal Theory. When we sense danger our vagal nerve is agitated. That puts us in a defensive mode. He has highlighted that our defense are not limited to ‘Fight or Flight’. Playing possum or the term he uses, going Dorsal is a human response as part of the autonomic system. I find the choice of the term ‘dorsal’ rather interesting. I suggests lying on one’s back, the most vulnerable position a person can be be in.

My second step it to acknowledge the number of situations I have been in where I subconsciously reverted to the dorsal response. I need to reverse the rationalization that I have given to each of those situations and call it for what it is. Namely, I was not being respected and my needs were pushed aside.

My second step will be challenging for a number of reasons. First, because my cognitive functioning is slower due to the TBI the situations happens before I realize the nature of what just happened. Secondly, the Dorsal response is not a thought out choice. The response flows out of the autonomic system which is the body responding in a reactive way.

This leads me to reflect on situations sometimes several days after they happened and realize what went wrong. That usually doesn’t leave any options for taking corrective action. The opportunity is past. At best I can learn from the situation and hopefully recognize a similar situation while it is happening. A tall order.

I have arrived at some general conclusions. The negative events that lead to sensory overload usually involve dealing with people who are self absorbed or inconsiderate. It’s often people who are unable or unwilling to see another person’s point of view. I think there is often a blindness to what effect their words or actions have on other people.

Request

I wonder how other people deal with challenges related to their disability. Do you have experiences that have worked well? Have you own experiences given you helpful insight?

Jasper Hoogendam (c) October 2021

A Personal Para-Olympic

ON THIS DAY 4 years ago, August 29, 2017: Pedaled for 56 days, 6982 km, averaging 21 km/hr, 10 flats, 3 tires, 1 crash, 9 provinces, 4 ferry rides, 2 international border crossings, 52 fellow national riders, 43 church catered meals and a host of volunteers. An incredible experience for an even greater cause; ending the cycle of poverty.

Reaching a Personal Goal

This is the first week of the 2020 Para Olympics in Japan. Each person who is there has an identified disability. What each person is able to accomplish brings tears to my eyes. Realizing the extra obstacles and the emotional energy they carry.

Why would a person take on such a challenge? What motivates each of the athletes to step up to the plate and choose to train let alone to compete?

I first understood a narrow slice of their motivation from personal experience.

My Journey

The beginning of my understanding began in 2004. I received notice of an incredible event, a fundraiser that I very much wanted to be part of. The event involved cycling across the North American continent in order to raise funds to help alleviate poverty . I was unable that year because of job expectations. But I didn’t leave it at that. I decided that when I retire I would sign up.

Fast forward to 2015. I had given my employer notice that I would retire in July of 2015. However I missed that deadline. Five months before I was in a motor vehicle accident that ended my career. So much for a set retirement date.

The motor vehicle accident left me with an mTBI brain injury. After assessments were done, I was assigned to an OT (occupational therapist). One item that stood out in my first session with my OT is being asked to share my goals.

The first goal I shared was to be able to return to work. Yes I was 63 at the time. My second goal was to cycle across the continent. Both goals were noted. That was March of 2016.

By June of 2017 I had completed over 5000 km of training. I had gone from struggling to complete 5 km and needing two days to recover, to completing a 600 km ride in 4 days in May 2017.

When I was ready to leave for Vancouver my OT surprised me with her assessment comment. When I had set myself a goal of cycling across the continent, she seriously had her doubts. Her initial assessment of my condition had made her consider my goal as unattainable. Her assessment showed my range of deficits as too severe. For her this ruled out the possibility of achieving that goal. As an astute professional she did not voice her misgivings.

Just before leaving for Vancouver my OT explained that my success is the exact reason why she has each of her clients set a goal. It’s the client who is in the driver’s seat and will decide what can be achieved. She is the pilot for the journey.

The Ride from the Pacific to the Atlantic

When I was training for the ride my mantra was, “Over training is my insurance.” I had anticipated that I would have challenges. In light of that I did not want physical challenges to complicate things.

I arrived in Vancouver three days before the start. I wanted time to acclimatize and be rested up. All great plans. By day three I was overcome by the impossibility of continuing. I reminded myself that I had successfully completed 600 km in four days. That’s almost the equivalent of 4 century rides back to back. (100 miles or 160 km is a century ride).

On the tour each day was a challenge. I was one of 120 cyclists. The sheer number of people presented it’s own challenges. With memory issues, with neural fatigue, with executive functioning challenges, with post traumatic stress symptomology, and lesser though no less significant related TBI side effects there were unexpected obstacles and set backs.

The cycling involved taking down and setting up a tent in a different location each day. The trip involved helping with one of the service groups each day. Each morning required remembering over 2 dozen things that needed to be done before cycling away from the camp.

I had a cycling buddy versed in brain injury challenges. She told me she knew each day how close an eye to keep on me. She measured my well being each morning by how many of the over 2 dozen things I would have overlooked. She would measure that by how good my speech was that morning, whether I was responding with a few words or a full sentences.

With memory challenges I have had unexpected road blocks. One morning as I was ready to leave camp I noticed I had two flat tires. I had forgotten that I had arrived in camp with two flats the day before.

I woke up one morning having crushed my glasses and urgently looking for a remedy. This in turn delayed our 5:30 am departure to beat the hot weather and the anticipated crosswinds.

One day I got distracted by another cyclist and before I knew it I was heading straight for the ditch. In trying to avoid a headlong dive into the ditch I put the bike into a “third base” slide. I ended up in the hospital emergency ward. Fortunately no show stopping injuries. Was advised by the doctor to take two days off cycling. When the doctor told me it was mainly for my comfort I thanked her for the information and decided I would keep cycling.

Why Do the Cycling?

Despite all the challenges, the last thing I wanted to do was quit. The word quit was not in my vocabulary. Even so, I had worked with my OT to have an ‘off ramp’ for each week. If it was too difficult to continue I had to have a plan. The plan would ensure a proper exit and leave open the option of rejoining the tour.

The OT had also set out a safety limit with me. If I were to experience vertigo, I had to commit to taking time off for proper recovery. Thankfully that never happened.

Why did I keep cycling? I had set a personal goal 13 years earlier and I wasn’t going to let a brain injury stop me. I didn’t want my brain injury to define me. Despite the sometimes impossible and unexpected challenges, quitting was not an option. This at heart gave me a taste of why Para Olympians achieve what they do.

After the Cycle Trip

The difficult thing to accept was what followed the cross continent ride. Just because I had successfully completed cycling through 10 Canadian provinces and 3 US states, the day to day living challenges remained.

I had somehow convinced myself that once I had achieved my goal that the daily challenges would be reduced. I was wrong. I soon realized that it’s the strength I received from reaching my goal that gave me the perseverance to continue to meet my daily challenges.

I have continued to set goals for myself. Not necessarily in the cycling domain. I have set goals for different projects. Like the cross continent cycling in which I raised $16,000 as part of the $1.6 million raised, I focus on reaching out to meet the needs of others.

Despite my daily challenges, I have an abundance of resources to help me which allows me to be of help to others. I am thankful for the support within my family. I am grateful for the support and encouragement I receive within the community I live.

Jasper Hoogendam

Note: The note at the very top summarized the official 2017 Sea to Sea tour from Vancouver to Halifax. Since the tour was during Canada’s 150 year celebrations I decided to extend my cycling to Newfoundland along with two other cyclists. So, the total distance was 7500 km with one more ferry crossing, and thankfully no more flats or other emergency events. I made it to the eastern most point of Canada, Cape Spear, Newfoundland on September 2, 2017.

Farewell Conversation

Farewell on the bridge
Our paths converged

Our paths have crossed

Our paths have diverged

Or have they

For time and again they have converged

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We’ve walked a road

Sights familiar to us both

Each with our own turns

Each with our unique detours

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We’ve had a brief word

Now and again

Just in passing

Each on our way somewhere

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Oh to take time for one another

Oh to pause from the hectic to and fro

To who knows where

Seize the time, make that now

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And there you stood away from the crowd

Observing, reflecting or just gazing

I took that as an invitation

Rather than escaping home

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You provided a place for me to retreat

To edge away from the crowd

Too busy, too hectic, too overwhelming

For I wasn’t ready to leave for home

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Your smile and openness welcoming

For me a place of relief, to relax, to pause

More than a passing comment

Time to listen, observe, share

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Much water under the bridge

I felt your struggles

I sensed your acceptance

I heard your triumphs

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I shared what you meant to me

What support you gave me

I sought you out as a mentor

When I wasn’t sure how to lead

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You shared your ongoing attempts

To reach out, to remain connected

To those dear to you

Particularly with family

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You shared your thoughts on the marginalized

How to reach, how to support

Not discounting the mysteries

The wisdom to reserve judgement

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You shared hopes for tomorrow

Reaching ahead, looking forward

Also acknowledging advice about your goals

Adjusting your priorities as you age

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I would have gone home

Overwhelmed by the emotion of recent events

My disability pushed me away from the crowd

While your demeanor pulled me aside

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It was the week you were called home

It was our final sharing

A conversation that I had been anticipating

A fitting goodbye, a memorable farewell

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(*) Remembering Harry

photo credit Lenie Rhebergen

(c) Jasper Hoogendam

Is Early Onset Inevitable

inflammation pie chart
A Good News Brain Inflammation Pie Graph

Within a couple month of my introduction to the world of TBI (traumatic brain injury) my family doctor did not mince words. His comment was something to the effect of, “Welcome to the likelihood of early onset of dementia.” That was a reality check for me. Those were not encouraging words at a time when I was dealing with ongoing headaches, serious memory issues, troubling side effects of being in social settings, sleep issues, and more.

How likely is early onset? Is early onset in the context of brain injury an avoidable reality? Those thoughts came back to me at various times in the past seven years. It also raised the question as to why this was a likely outcome of the brain injury. Was it an assumption based on data?

There is reliable information about the effects of repeated head injuries of professional football and hockey players. There would be a difference between repeated head injuries and a one time TBI event.

Looking Back

In looking back I have come to realize that the level of inflammation in the brain was my clearest indicator of how well my body was adjusting to living with ABI (acquired brain injury).

When there is inflammation in the brain, the area of the brain that is inflamed is not receiving a healthy level of oxygen. When an area is chronically deprived of oxygen the area starts to degenerate and lose functionality. That is not a helpful pattern when one is looking for healing and restoration of various functions.

Inflammation pattern

Immediately following my injury I experienced a headache on a constant basis. The only thing that would change was the intensity of the pain. Over time, probably around 18 months, the headache became intermittent. The change to intermittent was a promising improvement.

After about two years I found myself without a headache for longer blocks of time. When a headache would return I found it disheartening. Gradually I became aware of the link between my headaches and the activities I was doing.

There were certain activities that would bring on a headache. One situation stands out very clearly. I had been put through three evaluations within a two week period. One evaluation was at my request, a full day neurological assessment. The other two were demands that the motor vehicle insurance put on me. One was a two hour assessment by a third party ordered and paid for by the insurance. The intent of the assessment was to report back that I no longer needed professional injury recovery support. The third assessment was a full day appointment to determine the level of physical, mental and quality of life loss I had experienced as a result of my injury.

All three evaluations were cognitively demanding. Not good when one’s brain has been injured and is still healing. In addition, since each evaluation was a ‘high stakes’ event there was a heightened level of stress.

Concerning Side Effects of the Assessments

On my health appointment, within a couple weeks of the three assessments, a note was made that the level of inflammation in my brain had increased. I recognized the type of head pain I had been experiencing recently and realized that it could serve as my gauge to recognize when the inflammation in my brain had gotten worse.

Being able to make a link between the type of head pain (a feeling of pressure from all sides) and the increased inflammation was very helpful. In the following months I could recognize when the level of inflammation was increasing or decreasing. I could then modify my activities and the intensity of my activities to better manage myself.

About 4 years out from my initial ABI, I was told that there was still a troubling amount inflammation in my brain. While the level of inflammation was not registering on my headache ‘scale’ it was still a concern.

Despite taking various vitamins and minerals as well as keeping physically active, the level of inflammation was not being reduced to an acceptable level. Actually, the truly acceptable level would be zero inflammation.

The Lowest Point

About four months ago (three years after the report that a certain level of inflammation was still present), my health professional pointed out that my level of inflammation had decreased by over 90 percent in the past twelve months. This dramatic reduction in inflammation coincided with the eight months of Listening Therapy I had completed.

The dramatic decrease in inflammation corresponded to my dramatic increase in memory and my executive functioning. The details of the Listening Therapy and how it impacted my daily functioning can be found in a series of 6 blog posts beginning with Tiniest Muscle with Real Pull (part 1)

As I look back over the past 7 years I now have a different interpretation of my ability to function. I no longer agree with my original assumption that it’s difficult to function properly when I have a headache. Instead, it’s difficult to function when I have an increase in inflammation in my brain. The inflammation affects my memory, my cognition, my emotional vulnerability and my energy level. The headache is simply the gauge, not the cause.

My inflammation low point became my emotional high point.

Early Onset Risk or Not

I have no idea what my level of risk is for early onset of dementia. However, I am reasonably assured that the dramatic reduction in inflammation in my brain had dramatically lowered my risk of early onset. With the drastic reduction in the level of inflammation, that area of the brain is receiving a higher level of oxygen which is critical for brain health.

Considerations

I’ve concluded that my choice of activities can have a direct bearing on my brain health. While that is probably true for anyone, since my brain injury I find myself more susceptible to stresses and demands being placed on me.

Since my injury I have focused on finding activities that are less likely to exacerbate my vulnerabilities. Given the unpredictable nature of my ability to function in the first few years, I was not able to commit to anything that followed a strict schedule. For example, to volunteer on a particular day each week was not a workable option. The stress and disappointment each time I was not able to keep my commitment would add unnecessary stresses.

I have meanwhile found one activities that does fit well. I have found cycling to be a very good fit. The level of exertion I could put into it seemed to reduce my post traumatic symptomology. The noise of traffic and the risks of sharing the road with cars and trucks did not seem to be a problem.

Increased Commitment Level

In the past two years I have found gardening to be an activity that fits very well with the ups and downs I experience. I have successfully kept a half acre of vegetables in a satifyingly productive state. The rhythm of gardening had been a great fit. Being out in the early morning around sunrise is definitely the most relaxing activity I have found. If I’m recovering from a set back, the garden can do without my help for a couple days. Having accepted that, I find gardening helps me during my recovery periods. During recovery times I need something physical, non-strenuous and repetitive. Well, hoeing and weeding fits that bill very well. I can set my own pace and how long I do the activity. There’s always some area of the garden that could use that kind of attention.

Scheduled Commitments

When I was six years out from my ABI I agreed to take on a volunteer scheduled multi-year commitment. I am now one year into the commitment. The work has involved following a schedule, doing some advance planning and following up on things in a timely manner. At times the unexpected stresses that accompany the volunteer work does set me back. At times it takes me three or more days to recover and function effectively again.

At times I wonder whether it’s worth the setbacks. When I find myself wondering whether to continue I consider two key factors. First of all I consider the satisfaction that I get out of the volunteer work. Second, I need to be able to see a way forward. Yes, I can expect to go through recovery times, but then I need to think of the cost benefit. When the cost / benefit tips the wrong way then I know it’s time to make changes. The changes might be adjusting things with the ongoing commitment or it might mean finding a different volunteer activity.

However, I don’t see my recovery time as lost or nonproductive time. I have the gardening which give me the satisfaction of doing something worth while. The recovery time also give me time to contemplate and take personal stock of what keeps me busy as well as the goals I have set for myself.

By being pushed from time to time into a space of taking stock, I avoid the misgiving of just blindly moving along. Meanwhile I will stay alert to my long term health and monitor my level of activity based on my ‘headache gauge’.

I Weep

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I weep for the children torn from their parents

Taken to a strange place ‘for their good’

Isolated, mistreated, unloved, neglected, abused and seemingly forgotten

Quietly embraced by Mother earth to preserve their memory

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I weep at the suffering and the loss of life, young children

Buried in shallow graves dug by other young children

Hearing the shallow sound bites as the horror is being laid bare

Lip service apologies while entrenched in one’s place of white privilege

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I weep when the Truth and Reconciliation Commission report is held up as an icon

An icon that is handled like a closed book, displayed like a trophy in a secure case

Unopened for fear of a power shift when taking steps towards healing

Healing that can only come by stepping away from the pedestal of power

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I weep over the multi-generational hurt and abuse

Of lost family life and motherly nurture

Each child torn away from family at too tender an age

Torn from siblings, from home, from language, from community

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I weep for those told to `get over it

The callousness of the attitude towards each traumatized adult

Each adult trying to get past the horrors of residential school

Each adult searching for their identity, to reconnect with their language and culture

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I weep when land rights are not honoured

When companies use police to protect their usurped interests

When informed consent needs to be demanded by the courts

And then not carried out in the land rights negotiations

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I weep when sacred ground is desecrated

When land is stripped of it’s life and resources

When life giving land needs to be guarded at great personal expense

While being confronted by police used like private agents for resource companies

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I weep because our country lacks the vision and hope

For what can be gained by turning one`s back on the colonial mindset

A mindset that condones raping the land, causing untold destruction

Meanwhile turning one`s back on seeking healing and reconciliation

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I weep for the disproportionate number of indigenous incarcerated

Locked away rather than being helped

Locked in a ‘correctional’ institution that will not offer correction

An institution that further alienates and victimizes

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I weep when I hear apologies for the deeds of the past

For deeds carried out by our ancestors and many still living

By deeds done in the name of Christianity

By deeds so misguided that there can be no excuse

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I weep when I hear apologies for the deeds of the past

While the present actions do not change

The present actions showing the same annoyance for Canada`s Indigenous

Today`s misguided deeds forming the apologies to be delivered by the next generation.

I weep for each child torn from their family.

I weep at the lack of will to change

Unwilling to ease the reins of power

Unwilling to concede our place of white privilege

The arrogance of a colonial mindset

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Weeping will continue till the end of this day

Weeping will continue into the darkness of the night

Joy will come when a new day dawns

When each Canadian can truly embrace every person as a valued citizen

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Joy will come when those of privilege enact change

When people of privilege stand along side aboriginal Canadians

When a mindset of power becomes one of heartfelt sharing

When people with power recognize that healing is the only way forward

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Joy will come when each Canadian is valued equally as a citizen

In a country that can be great and a light to the world

A country of peace, healing and hope for the future

A country that has the potential to choose a path of justice for all

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Joy will come when we realize that white privilege is alive and unwell

When we truly become a merit based society

When we truly give equal opportunity

When we truly love our neighbour as ourselves

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Psalm 30:5 … weeping may endure for a night, but joy comes in the morning.

Jasper Hoogendam (c) June 2021

Juggling

I thought I would liven things up a bit for my grandchildren early one morning. They had stayed for a sleep over. I thought I would share with them a juggling act.

I realized I had not done any juggling since my TBI seven years ago. Just never got around to it. It’s one of those things that since it’s out of my mind it just doesn’t become a option.

It’s much like the lack of variety in choosing what clothes to wear each day. Since I never think of the clothes that are in my dresser or the closet I just wear what’s come out of the wash and is lying at he foot of my bed.

While I know I have clothes in my dresser, when it comes time to get dressed I somehow just don’t make the connection.

Anyway, I was motivated to try some juggling. I had taken up unicycling when I was 51 years old. Somehow the people I met while unicycling would invariably ask if I could juggle. Why the expectation? I don’t know. Anyway, I thought the questions were a good reason to learn to juggle.

I learned to juggle reasonably well, though I never did master juggling while riding a unicycle. Just too much brain activity trying to coordinate everything at the same time.

Anyway, on this particular morning following my grandkid’s sleep over I put my mind to simply juggling. I tried. I dropped the balls. I tried again. I dropped the balls again. My grandkids laughed.

Not only did I keep trying, I was thoroughly convinced that if I simply focused, ignored any distractions in my surrounds, and gave it my all that I would succeed.

Well, I succeeded in giving myself a terrible headache. That came after about 5 minutes of focused, undivided attention. My headache was of the nature that felt like my head was in a vice. I felt nauseous and couldn’t function very well the next couple hours. The headache and nausea stayed with me till late in the day. I still had residual effect of the headache two days later.

What I had been able to do at a one time with very little concentration, I could not manage any success despite giving it my full concentration. Something has changed in my brain.

That does raise the question. Can I work through this in stages and overcome the challenge. I ask this in the context of having manage some significant improvements over the past year. Yet this might be different.

If I were to practice for only one minute each day, could I regain the skill without finding myself dealing with severe head pain combined with nausea? Is relearning the skill worth it?

I would consider relearning the skill, not for the sake of the skill, but rather to see if this challenge can be mastered. This is one of few things from pre-ABI that I am not able to do. Any other skill or activity that I have done pre-ABI I can still manage to do, albeit with varying degrees of modification.

For example, I have not been able to ride a 36″ unicycle anymore. But since I can still ride a 28″ and a 20″ unicycle, that’s a modified success.

I’ll have to think this one through… to juggle or to not juggle. Is it worth the setback?

Advocacy versus Self-advocacy

I recently had an opportunity to compare self-advocacy to advocating for another person. Given my acquired brain injury (ABI) I find myself emotionally troubled when I see someone pushed aside or deprived of opportunities because of their disability. There are subtle but significant differences between the two types of advocacy. Experiencing the difference makes it clear that one can end up in unplanned situations.

I experienced the two types of advocacy with a small group of people that I meet periodically. The purpose of our group is to help improve the lives of people, both their daily living experiences and helping them to address longer term matters.

Advocating for Another Person

A safety concern was brought to our attention at one of our meetings. The concern dealt with a contract worker whose eyesight was gradually failing. The recommendation was that the person no longer be considered for short term contract work.

The reason cited was the concern around liability insurance should the person fall and sustain an injury. The general consensus of the group seemed to move quite strongly toward no longer requesting the person’s services.

This troubled me because there were no performance issues raised. In fact, an informal assessment would indicate stellar performance. No suggestions were made to make reasonable accommodations. The accommodations that the person had made were not considered sufficient.

I have personally experienced loss of job and a significant reduction in my ability to make contributions within my community. From my vantage point I strongly felt the need to speak up. I had no misgivings about pushing the issue to see it through to a just and fair conclusion.

In the past six years I have persevered despite the many personal challenges related to my injury. The encouraging comments readers have given me, the encouragement that others have received from noting my determination has in turn been a motivation for me. My goal was clear. The path forward was straight forward. I was not going to let the contract worker down.

Self-Advocacy

Recently I made a request within the same group. As a member of the group there were certain practices that made it difficult to fully participate. The change I requested dealt with a practice that pushed me to my limits and detracted from the contributions I hope to make within the group.

I explained the change that I would like to see. I explained how my concern related to my acquired brain injury (ABI). I did not consider the changes as having a negative effect on the group’s effectiveness.

I was disappointed because I felt that my request was not given proper consideration. The responses ranged from taking my request under advisement to strong objection to my concern. In the end no decision was made to address my concern in light of my ABI.

A Look Back

When I advocated for the contract worker I was adamant that this was wrong and I was unwilling to accept the recommendation. I pushed.

I did not feel conflicted about my actions and therefore did not find it difficult to advocate. My insistence on a fair and just decision could not be interpreted as me being selfish. My pushing could not be interpreted as me having a hidden agenda. My pushing did not create personal misgivings because I did not stand to gain personally by it, except hopefully the satisfaction of ensuring justice was done. Throughout the discussion I was focused on righting a potential wrong had I not spoken up.

More recently, my personal request to acknowledge the limitations that my ABI put me in a different emotional space due. I was confronted with what I felt was hostility. It’s as if my request was putting unreasonable limitations on others. I did not have the emotional energy to push the matter. Did my request unfairly limit another member’s ability to make an effective contribution? I felt the brief explanation that was given was unsatisfactory. I didn’t feel comfortable requesting a further explanation. I let the matter rest.

I was not comfortable with moving the discussion into the area of making reasonable accommodations. I did not push the discussion into the area of my human rights being denied.

Self-advocacy takes resolve but is fraught with personal pitfalls. I felt the potential of being misunderstood was too great. There is the fear of being ostracized or considered a trouble maker. I did not want to be perceived as being uncooperative. I felt I was entering a minefield of potential problems if I pursued my request. I did not have a clear enough map of the area I would be entering.

At that junction in the discussion I remembered the strategy that my occupational therapist had advised. Due to my cognitive challenges she regularly suggested that I take time to make the necessary preparations. She advised me to write out what I needed to say. She also suggested looking at related concerns that I might need to address and write those out as well.

I chose to not pursue my request at this time. My tell for my decision was how I gauged the reaction I got. I felt a lack of care and willingness to help me sort this out. On reflection it is rather ironic as one of the purposes of our meetings is focused on caring for people.

Have you faced challenges in advocating for your limitations due to your ABI? Were you successful in seeing changes made? To what do you attribute your success? How did the process affect your ability to manage your ABI symptoms?

Choose Locally Owned Shops

Spending my time and money more wisely

A well rounded diet for winter birds

I needed to buy some wild bird supplies since the woodpeckers at my feeder cleaned out the suet. I headed into town and thought I would quickly run into the local Canadian Tire store and be on my way. But we’re in COVID lock down.

No surprise. Most of the world is in lock down. The premier had announced an immediate lock down 4 days before Christmas that wouldn’t be implemented till after Christmas. Telling people to stay home but giving businesses time to reduce inventory on hand. (What kind of logic is that?)

In the five days before the lock down I kept forgetting to get some suet. I hadn’t thought about the change in protocol till I saw the curbside pick up signage.

So I went online to get myself into the queue only to find out that Canadian Tire would gladly fill my order within 5 to 10 business days. Well, that wouldn’t do as the woodpeckers had totally cleaned me out. A five day delay in getting supplies would not do.

So I went on line with Home Hardware. After I put one package of suet in my on-line shopping cart I got the message that I had to spend another $47.50 to complete my curbside pick up order. They would not risk the health and safety of their workers for orders of less than $50.00.

I’ve always wondered what a person’s health or safety was worth.

So I checked Home Depot. While they would sell me suet holders they do not sell the actual suet. I wondered what to do so that the woodpeckers would not starve or abandon my feeding stations. I couldn’t think of any other stores in town that would be able to serve my needs in a timely manner.

Then I remembered I had a membership at the Grafton farmers coop about 10 km east of town. I expected that they would carry suet. I gave them a call and made my request. I told them I would like five packages of suet, specifically for woodpecker but any other kind would be fine. I thought I would ask for five packages so I wouldn’t have to do another curbside pick up in the near future.

When they told me they could fill my order, I hesitantly asked if I could pick it up today. More precisely, if I could pick it up in 10 minutes. I got a heartwarming yes in response. When I arrived my package was ready. I paid and left the store.

Durham County Farmers’ Coop – Grafton

It seemed too simple and effortless. No waiting. No line up. No five to ten day delay. What the Big Box stores could not provide in service, the coop did seamlessly and with a smile. And the price was competitive.

Small shops have it over Big Box stores

During the lock down last spring, Home Depot and others stores like Staples would make customers wait a week or more to get their orders filled. That’s how long it would take for the supplies to come from the warehouse. They would not fill the order from the stock they had in the store because they wanted to have the store fully stocked once the Lock Down order was lifted.

I assume they were not familiar with the line, “A bird in the hand is worth two in the bush.”

During the spring lock down I put in a gardening order at Canadian Tire. After a three day wait I got an email from them confirming that my order was ready for pick up. I considered that an acceptable turn around time. When I arrived I gave them my confirmation number and expected them to wheel my order to the car in a few minutes. Not so. I waited. I waited some more. The line up behind me grew. After almost a half hour they came out with my order.

The wait left me wondering. They either had trouble locating my order or they were busy filling my order of 6 items while I was waiting. So then why did it take 3 days before they notified me to come to the store?

My lesson learned

Buy local. Find a small store. They have the brains to do things right. How else do they survive the competition from the Big Box stores. Even if it cost a bit more to shop at a small locally owned store, at least I wouldn’t have to deal with the aggravation of seeing someone else’s disorganization being plagued on me and other sorry customers.

One of the biggest stores in town that is long gone ran on the slogan, “Because the lowest price is the law.”

The slightly higher price of the smaller shops is okay when you know that more of the money you spend stays in the community. That’s a key ingredient for building a thriving local economy.

The Cliff

Blomidin Provincial Park – Nova Scotia

My home

My welcoming place

Family, friends, strangers

Hospitality

Enjoying distant horizons

Taking in the ebb and flow

Rolling with the daily changes

Embracing the rhythm of the seasons

Basking in the joy of sunny days

Welcoming breezy nights

Marveling at the awe and wonder of the storms

The adrenaline rush of witnessing raw power

Great for the beans and carrots and tomatoes

One afternoon a storm blew in

Marveling at the raw power

From the security of my kitchen

Seeing the intensity grow

Into the night it raged

A hint of unease

Something was different

Wishing it to subside

Woke up to an eerie calm

All seemed fine… till…

The garden fence was gone

My summer shade tree tottering

The cliff

Too close to ignore

Never out of my mind

My haven

Will it stand?

The cliff

Too close for comfort

I watched the ebb and flow

I noted the daily changes

I tracked the seasonal rhythm

Sunny days came – missing my shade tree

Breezy nights happened – shuttered my windows

Always wondering

Growing unease

The cliff

Too close for comfort

As the horizon darkened

Listening to weather forecasts with a hint of concern

Just a shower or… will it rage…

The cliff

The cliff

Oh to once again bask in the warmth of sunshine

To once again embrace the changing seasons

Oh to once again run with the breeze on my back

The cliff

Cliff

liff e (read life)

iff… only

* Dedicated to Danielle

Jasper Hoogendam (c)

I Wouldn’t Trade 2020 For Anything

As I look back on the year I realize I had experiences that I wouldn’t trade for the world. I know that each year comes as a full package. We can’t pick and choose. Even the idea of picking and choosing is in itself ludicrous.

My List of Thanks

  1. Travel to Cuba
  2. Healthy granddaughter born
  3. Improved health
  4. A flourishing garden
  5. Opportunities to help
  6. etc.

It’s not the list of accomplishments or events that makes me thankful. The accomplishments are fine, but I’m thankful for the nuances of daily living. It’s in the context of daily living that I find myself repeatedly thankful.

Joy in the Nuances

That doesn’t mean I didn’t experience disappointments. It took a couple months before I could do a careful visit to see our granddaughter born at Easter. But we did get to see her. A few months later we witnessed her unusual baptism. A no contact baptism in a time of COVID. No less awesome and grateful to welcome a new member into our family.

My mother was hospitalized just before COVID started. I didn’t get to see her in person till 8 months later when the Long Term Care home she had moved into allowed additional visitors. Phone calls and video calls, well not the same, at least assured me she was being well looked after. Thankful that she was in a not-for-profit home that experienced two minor outbreaks but no hospitalizations or deaths.

How the Year Began to Unfold

At the end of January I was able to make a brief trip to Cuba. The highlight of this trip was experiencing what I called Five Star Hospitality. Once it is safe to travel again I hope to visit this family living in the mountains along the south coast.

There is something humbling when looking back on a year that many have described as ‘unprecedented’. While for many, and I empathize with them, much of that reflects experiences of a world turned upside down. Who could have imagined something happening that would bump the Australian wildfires off the January news cycle?

I am thankful to have found myself in a situation that allowed for flexibility. I had opportunities to plan and make personal and family decisions related to the changes happening all over the world. Many others have found themselves in confining and scary situations in dealing with the pandemic short of hopeful options.

Shortly after our return from Cuba it became apparent that travel abroad and even travel within the province was going to be very limiting. So with expecting to be home bound for the summer or even into the fall, we made plans. That was the start of the flexibility that we realized we had.

Being retired just looked a whole lot better. No jobs that put us into risks of exposure. No worries about job income or going through all the red tape of applying for CERB. For me life continued mostly changed for the better. Groceries got delivered to our front door. Other essentials arrived by mail or courier. Life seemed to become so much simpler. I didn’t even bother taking he snow tires off the car because it was hardly getting used.

I was thankful for a much simpler life. Since my ABI (acquired brain injury) social settings have been a challenge. Even deciding whether to attend a social event orr deciding when to bow out of a social event had become a non-issue.

I welcomed social distancing. I spent much less time recovering from social events. Social contact was now mostly limited to one or two people at a time. That is much easier than navigating a room full of people or conversation with a group of seven or eight people.

Gardening: Experiencing God’s Miracle

Knowing we would be spending much time at home, our general plans began to be tailored to fit this new and simpler reality. We decided to add a half acre to our garden. One might call it a bit more than a garden, but not really a farm. Somewhere in between.

A half acre would produce more vegetables than we needed to put up for the winter. We decided that all the surplus vegetables could be donated to the food bank. We didn’t realize how desperate some food banks would be by summer. We happily shipped three quarters of our produce to the Yonge Street Mission food bank. As a Christian organization they were given no COVID assistance from the federal government. (Unlike most food banks.)

Having a food bank to take the surplus vegetables is so heartwarming. In addition to knowing I’m helping feed people in need, it his heartening to know that none of the surplus vegetable were going to waste. I did my last delivery of fresh vegetables, yes fresh vegetables on December 15. Fresh vegetables picked the day before with my fingers risking frost bite. Vegetables don’t survive the frost unless you put a dutch angle on gardening. Kale, (Westlandse boerenkool) improves in flavour when it has gone through a few frost cycles. Black Magic and Red Russian kale also improves with frost.

I was reminded on one of my deliveries to the food bank how much my vegetables were appreciated. On one of my deliveries the food procurement manager commented on how fresh the vegetables looked. He was so pleased when he heard the greens had been picked just 3 or 4 hours earlier. By the end of the season I had delivered about 1900 lbs (860 kg) of fresh, edible vegetables. He was used to throwing over half of the donated vegetables into a dumpster. So much of what would be donated was beyond edible.

We set up a four foot by eight foot vegetable stand at the end of our driveway for Farm Gate sales. It didn’t take long for word to spread. The prices were rock bottom. By that point in the summer many people who were earning much less welcomed the affordable fresh vegetables. I also figured if vegetables are left too long on the stand they would wilt and have to be thrown out. So better to sell cheap and not throw stuff away.

So thankful for the freedom to roam the half acre while the province went into the first full scale lock down. No need to physically distance since not many people are too keen on hoeing and weeding. No need to wear a mask or use hand sanitizer. Several hours a day distanced from the stresses and worries of society while knowing I was doing my part to help in some small way.

It’s the growing that is simply awe inspiring. It was the first time I had been gardening on this larger scale. I had decided to propagate a wide variety of beans so I could grow a proper crop of new varieties the next year; Soybeans, Red Mexican, Orca, Tongues of Fire, Cranberry, Vermont Cranberry, Thousand to One, and Bruine Bonen (Dutch Brown Beans).

It is truly amazing to put seed in the ground and just have things growing. It’s like it magically happens. Much of the seed, tomato, radish, squash, and peas I had collected from the previous year. Growing vegetables creates a comforting sense of self sufficiency not to mention an avenue towards increased food security. Oh the wonders of propagating and growing.

As I was working in the garden preparing the soil, weeding or hoeing, or harvesting, I often thought about my grandfather. My grandfather was a market gardener who worked his four acre plot of land his whole life with his brother. As the summer progressed I was imagining glimpses of my name sake who raised 11 children on a small plot of land.

Health

The most dramatic change I experienced this year is changes in my ABI recovery. A couple years ago I got a hint of what kind of intervention therapy I needed to look for. A year and a half ago I read an article that confirmed I wasn’t looking in vain. The challenge was finding a therapist who was qualified and capable of guiding me through the protocols and monitor my progress.

I ending up working with a former colleague. For both of us having known each other for a couple decade helped in deciding to venture into unfamiliar territory. I never imagined that the Listening Therapy would affect such a dramatic and sudden change on my daily functioning.

To think that two sessions of one hour could turn a big part of my life right side up again. That in a year of so many things being turned upside down. The dramatic improvement within the first two sessions motivated me to follow through on the program. I was able to do over 100 self administered daily half hour or one hour sessions through the summer and into the fall. The follow up was to reinforce the improvements made in the first two hours as well as bring less dramatic, but gradual improvements to other areas of my daily functioning.

You can find the details of this journey in a 6 part series of blog postings which I named Tiniest Muscle with Real Pull. I started the Listening Therapy at the end of April. There was hardly a day that went by that I would pause and simply marvel at the change.

They say you don’t realize how much you value something till you lose it. Well, there’s a bit more to that in my experience. You realize even more how much you value something when you get it back.

In the five years since my ABI I had adopted a large number of accommodations. Making accommodations had become a given part of much of my life. The dramatic change was mostly related to getting my short term memory back. That’s when I realized how much short term memory has to do with almost every minute of the day. Maybe even napping and night time sleep. Doesn’t dreaming require memory? I reflected on the memory recovery in my post What’s the Deal with Short Term Memory.

Being able to itemize all the changes I experienced when I recovered my short term memory was simply awesome. There’s no words to describe the experience.

Seniors In My Life

This fall I have intentionally been in regular touch with seniors. I know, I’m retired so that makes me a senior. Yes I get the senior discounts and other perks. But I’m talking about ‘old’ seniors. My mother in law before she passed the 80 year mark had a word for ‘old’ seniors which I can’t repeat here.

My time with seniors this fall has been eye opening. I had committed to being available to them and see how they were faring as the pandemic continued to make changes in their lives.

I expected to hear of different challenges as I checked in on them. Not a word about challenges. What I did hear was how they were reaching out to others. I hear how they were adjusting quite well and able to cope with the changes. With the recent lock down which aborted their Christmas plans each one was unshaken. They reminded me that they were prepared to take the measures believing they they would get through it.

As I reflected on their responses I couldn’t help but be thankful for the outlook they were sharing. With their outlook they were able to reassure others. This is the generation that lived through World War 2. They had experienced and lived through, hunger, danger, loss of family members, uncertainty and more. But they had persevered and they know they will get through this.

In Conclusion

And so, I wouldn’t trade this year for the world. If it meant that this was the only opportunity for these experiences, I would forever have been deprived of a year that has given me some amazing blessings to savour. This is both blessings that I’ve have received and ways in which I could be a blessing to others.

They say, “Hindsight is 2020 vision.” That’s my 2020 vision of the year.

It’s now 2021. The year is still very young. We don’t know what this year holds. There have been so many lessons learned this past year. We have an amazing past to build on. All I want to say, Blessings to each one of you in the New Year.